Luling 4 year old with genetic disorder brings 'sunshine' to those around her

Around the park on a beautiful day, parents pushed kids on swings and youngsters ran around with energy and abandon. One of the throng, running and laughing with her peers, was Luling 4-year-old Kylar Theriot.

At first take, it's a picture of carefree youth.

But for someone who knows Theriot's story, "carefree" may not be the best way to describe her life. Theriot was diagnosed with Prader-Willi Syndrome (PWS) shortly after birth. PWS is a genetic disorder that occurs in approximately one out of every 15,000 births and is characterized by low muscle tone, obesity issues, insatiable hunger, and intellectual disabilities.

Theriot's mother Kelly Robbins knew something was wrong immediately.

"When you are pregnant you have so many dreams of what your child will do and what they will becomes," Robbins said. "I knew in the hospital that something wasn't right. During my C-Section I can remember just waiting to hear Kylar cry, and started to think something was wrong because she was silent."

PWS is recognized as the most common genetic cause of life-threatening childhood obesity. Robbins worried about her baby and what the future would hold.

"When Kylar was diagnosed with PWS, my dreams for her future were momentarily ripped away from me with doctors telling me what my child will not be able to do," Robbins said.

Robbins, however, saw her daughter fight and decides to fight too. Robbins engaged a host of therapists and specialists to help her daughter build muscle and progress.

After watching Theriot work so hard through her therapies, Robbins became determined to help Theriot maximize her potential.

"I will not let others define what my child will be able to do," Robbins said. "I will never have a mindset that she cannot do some things, for I believe that is setting her up to failure. She is a mini beast and lets nothing get in her way. She is so tiny but my tiny person is purely made up of strength and undying determination."

Theriot began many in-home and outpatient therapies at just over a month old and since the time she was 18 months old, she has had eight therapy sessions a week. Some of the in-home therapies include occupational therapy, working on final motor skills, and physical therapy, promoting mobility and function.

Speech therapy helped Theriot work on mouth muscles and verbal ques. Theriot had trouble making herself known, but she understood what others were saying to her.

"I could tell her to go get a certain book or article of clothing and she would do so," Robbins said. " If I could not understand what she was trying to convey she would get very frustrated. But she wouldn't stop until you knew what she wanted."

To alleviate this frustration, Theriot learned to communicate using sign language. Currently Theriot can use words and string together sentences to communicate.

Theriot's occupational therapist also works with her through aquatic therapy.

"Working with Kylar has been an awesome experience. I began working with Kylar before she could walk. We played together both in the clinic setting and in the pool with aquatics," Early Steps Occupational and Aquatic Therapist Ashley Waguespack said. "For a child that had to work so hard to move her body through her environment to play, she possesses the strength and determination few have."

Another activity Theriot enjoys is riding horses. She began Hippo Therapy Greater New Orleans Therapeutic Riding Center at 18 months old. A horse has movement that most closely resembles a human's waling gait.

It teaches the brain more efficient movement and head control, as well as developing upper body strength and coordination.

"It has been a thrill to see Kylar make such great strides with the help of our horses," said Anita Hefler, the founder of the Greater New Orleans Riding Center in LaPlace. "When we saw her for the first time we had to help her hold herself up. Now she sits up, steers, and moves around on the horse independently."

So far, Theriot has exceeded all expectations. Theriot is still has lower muscle tone compared to "typical children" her age but she is not far behind. She loves running like her mom, swinging, and she even does insanity workouts at home with her mom.

Dr. Jennifer Miller, out of Florida who is the leading PWS doctor in the world, is Theriot's main doctor. She attributes Theriot's physical accomplishments to therapies and her mother's help.

So does Waguespack.

"Kylar's progress would not be possible without the persistence of her mother, who is her No. 1 cheerleader," Waguespack said. "It has been amazing having the opportunity to work with both Kylar and her mom."

In fact, Robbins got in shape to help her daughter get active and strong.

"I don't know where I would be without Kylar," Robbins said. "I was in a very bad state but I had to be strong for her. I had gained so much weight and very unhealthy and everything with her syndrome was a kick in my butt to get myself better. I made a choice that we were going to live a healthy life style together, not because of PWS but because we chose to."

Robbins began running and working out the CrossFit. In 2016 she was selected to run the NYC marathon and fundraise for Foundation for Prader-Willi Research.

Even before Theriot could walk, she would give hints that she wanted to run like her mom.

"I would train for my races at home on a treadmill. Since I can remember after I would finish a run Kylar would crawl on my treadmill and bounce around while sitting imitating me even before she could stand," Robbins said. "As she got stronger this turned into her standing and eventually running for short periods on the treadmill and outside. Some kids at age 2-3 years old know how to work phones or iPads, Kylar knows how to properly work a treadmill."

Robbins also co-hosts a race called One Small Step for PWS 5k that is held annually at Mulberry Park in Houma and funded by the United Way of St. Charles.

All funds go to FPWR to fund research in hopes of a cure. FPWR is composed of hundreds of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delay, psychiatric disorders, and autism spectrum disorders.

When she is not working out, Theriot has many other interests. She thoroughly enjoys music and books. She knows every word to every song by Carrie Underwood and belts it out any chance she can get. She says she wants to be Dolly Parton when she grows up.

Theriot also enjoys visiting with her friends at Mimosa Park Elementary, where she is referred to as "Little Miss Sunshine" for her beautiful smile and seemingly eternal happiness.

"Kylar has been a student in my class for almost two years. Her determination, independence, and support from her mom have helped her to succeed and surpass all expectations," Mimosa Park teacher Natalie Hooper said. "Kylar is an extremely social student. There is probably not one staff member or student at Mimosa Park Elementary who does not know Kylar. She is a friend to everyone."

Those around Theriot see past the PWS to the fierce determination and personality the child has.

"Kylar's future and possibilities are endless," Robbins said. "I see her excelling in choir, learning to read and starting sports. I cannot wait to see her chasing a soccer ball or running around the bases in little league."

"I would not and will never let PWS define her," Robbins said. "She is not PWS she is Kylar, an amazing, beautiful talented little girl with so much love and has so much to offer this world."